As media coverage of the Justina Pelletier case has grown, so has the misconception that mitochondrial disease is closely correlated with medical child abuse and its predecessor diagnosis, Munchausen’s Syndrome by Proxy. On behalf of MitoAction and the mitochondrial disease patients we represent, we are extremely troubled by this development and wish to highlight the obvious differences between mitochondrial disease and medical child abuse.
Dysmotility: abnormal contractions of the bowel, which slows or impairs digestive emptying and may cause symptoms such as pain, nausea, bloating, diarrhea, constipation or vomiting. Dysmotility can be caused by abnormalities of the muscles of the intestine (myopathy) or by abnormalities in the nerves in the intestine which control the muscles (neuropathy). For children and adults with mitochondrial disease, dysmotility is common and can be due to muscle myopathy and/or autonomic nervous system dysfunction (dysautonomia).
MitoAction hosted the Mitochondrial Disease Clinical Conference LA and the LA Mito Patient & Family Social on Feb. 8-9, 2014.It was an amazing weekend for everyone involved!
The story of one girl held in custody in Boston without the support of her parents due to a disagreement about her mitochondrial disease diagnosis is an example of a problem which is happening to families across the country. Join us in taking action and learn more about our advocacy efforts.